This blog is for caregivers, written by a caregiver, to give support, advice, and encouragement.

We went to bed, but it wasn’t long before I was up gathering the documents the hospital brochure said we would need. Andy was up early the next morning, and while he was in the shower, I was on the phone calling around to different cemeteries to find out which ones had mausoleums. Since Clara only had $1500 in life insurance and about $3500 in the bank, it was quickly becoming obvious we were far short of what we needed. I was shocked to learn that a burial in the ground cost less than being put in a mausoleum. I called the funeral home to make an appointment to come in that morning to finalize arrangements and made another appointment at the cemetery where my father was buried. When at the funeral home, I expressed my shock at the cost involved at the cemetery. The funeral director actually had the nerve to talk negatively about how the cemetery takes advantage of people during these difficult times. I looked at the paperwork the funeral director just provided, at the list of charges from embalming, to various charges for using the funeral home, I had to bite my tongue because he offered no bargain himself. When we got out to the car, Andy thanked me for keeping my mouth shut when the funeral director made his negative comment. I laughed that he knew me so well. The cost of the funeral home already exceeding any monies Clara had and we knew the rest was coming out of our pocket. Through the years, money always seemed to be a dividing factor somehow. Once Clara sold her modest house and moved in to live with us, whenever we would make a major purchase, Clara would tell me that one or both of the girls would express concern that we were using her funds for our purchases. Andy was a hard worker with a good paying job so I could never understand the accusations. I remember one time asking Andy if we should show them our prior years tax return so that they could see that we can afford the things we buy and he basically asked me if I was nuts, it was none of their business. He said as long as they went to their mother saying stuff, he considered it gossip. If they were really that concerned, they could come to him and he would address it then. It always bothered me. Even when Andy bought me a beautiful blue diamond ring for our 25th wedding anniversary, I did not tell Clara for months. I knew she would be excited for me, and naturally share the news with her girls, and then the money complaints would resurface. I wondered at times how they thought we could buy so many things and take so many vacations on the amount of money Clara gained from the sale of her house. When Clara first starting going to the doctors, she needed so many medications to address untreated long term problems, her medications were quite expensive. Clara’s savings dwindled down for a number of reasons, none of which was for our financial gain. When Clara would relate something that one of her girls said about her money, I would ask her if she was concerned that we were mismanaging her money. She always said she was not worried at all. Eventually, when someone commented to her about my beautiful ring in her presence, she was upset that I never told her about it, (with her limited vision, she never noticed it). I told her that I knew she would tell her girls and I didn’t want her to have to hear again that we were using her apparent endless supply of money. Clara said, “Do you know how sick I am of hearing about that money? Sometimes I wished I never got any.” I knew how irritating it was to me to have these ongoing accusations made, but I never stopped to think how hurtful it was for Clara to hear these things as a parent. It had to be hard for Clara to hear her daughters accuse her son, that she was living with, of stealing from her and not having her best interests at heart. Of course, I don’t think they ever thought Andy was stealing from her, but that I was. Clara told me once that it probably relieved their conscience that I did so much for her, for them to think my motive was for financial gain. When Clara said that, I asked her point blank if that is what she thought and she said, “Michele, I know you take care of me because of how much you love me.” Clara wasn’t sentimental in her expressions, so when she would make a statement like that, it would mean a lot to me. So now we are heading up to the cemetery, we have already added $1000 of our own money to Clara’s proceeds to settle the funeral home expenses. Obviously, the cemetery expenses would be all out of our pocket. I about fell off of my chair to find out the cemetery cost would be close to $5000! How could a one day viewing at a funeral home and a slot in a mausoleum cost over $10,000.00? What a rip off. I went into business mode at the cemetery and started questioning the validity of some of the charges itemized. The cost of digging a grave, placing the casket, and filling the grave in, was less than the cost of sliding her casket in what amounted to me as a drawer in the mausoleum. The salesman, oops I mean director tried to come up with an explanation, but then Andy interrupted and said, “Basically, it is what it is.” The director agreed. I realized that was my cue to shut up. I’m trying to negotiate a reasonable price to honor his sister’s wishes, but forgot to be sensitive of Andy’s feelings. This was not a business deal, but his mother’s final arrangements. When we left I apologized for how I handled things. Andy laughed and said that I turned into quite the business woman in there, but he could see that it was futile, the price was non-negotiable. I apologized again for not being more sensitive to his pain, and he said that it was not a problem. My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY. I appreciate all of your comments and wish all caregivers the strength they need to cope each day!

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I called the funeral home, and the kind gentleman that answered the phone said they would be right over to pick her up. I went back to let the girls know that the funeral home was on their way, and that Andy did not want to see their mother laying there so I was taking him home. They understood, and with that I emerged from the recovery room and we left with our entourage. I had hoped that the girls would leave soon too and get some rest, but was glad we would not be there for the emotion of them leaving. I offered for Andy to ride home with Zack, but he said he would stay with me. I like that Andy can draw strength from me during difficult times. On the way home he said he felt it was all for the best, that he too wondered if his mother was dying and knew her stay in a nursing home, would not be good. He said he never wanted the last image of his mother to be of her dead, but he did not want his sisters to face her without him. I told him he could work hard to replace that image with a happier one, especially since the prior four days had lots of unpleasant images we needed to block out.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY. I appreciate all of your comments and wish all caregivers the strength they need to cope each day!

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Moments later a nurse came out and asked to speak with me. She asked me if we had pre-arranged funeral plans, we did not other than the secret obituary I had saved on my computer. The nurse handed me a brochure explaining what documents would be needed to make Clara’s funeral arrangements and asked what funeral home we would be using. I told her I would gather the information and give it to her as soon as I could. Why come to me, she had been back in the area with Clara’s daughters? In times past, I had tried to feel Clara out on this subject. I remembered once telling her that Andy and I had decided if something happened to us, we would want to be cremated. I asked her if she had any feelings on that matter and she simply replied, “Once I’m dead, what do I care, I won’t know what is going on.” That was the most I could get from her. I went to Andy and told him that the hospital needed to know what the funeral arrangements were. He said if it was up to him, he prefers cremation, but that whatever his sisters decided he would support. That was the next problem. How do I bring this subject up when they are sitting and mourning with their dead mother? Andy said he could not go back again and see his mother laying their dead. By now, Zack had arrived, and Andy seemed like he was scolding him telling him he didn’t have to come. I told Andy that Zack wanted to support him, stop being the parent for the moment and let Zack do just that. Andy truly appreciated it, but felt bad for Zack to drive over by himself on this cold, dark night into such a stressful situation. I asked Andy if it was okay with him, I would go back and try to see what his sisters feelings were on the funeral arrangements. When I did, one of the girls was sitting on the gurney with Clara, the other stroking her head. I wondered if this was a typical difference between men and women. Andy could not stand to be next to his dead mother, the girls could not stand the thought of leaving her side. I asked if I could ‘visit’ with Clara for a moment and they said, “Sure.” I needed my time with her. As I went around the other side of the bed I stroked her face a bit. Her leg was out a bit from under the covers and she had deep, dark bruises on her leg. I wondered if the one bruise on her lower leg was from when her foot got trapped under the weight of her leg when she fell getting out of the shower. There were areas where her skin had broken down during the four day hospital stay. Another wound was obviously from surgery. I wished that when she coded two days before she was never revived. Looking at her purple bruises and incision was sickening. How sad that this poor woman had to go through surgery for nothing, but still felt relieved that her death was peaceful. I was lost in my own thoughts for a few moments, then told the girls that I was sorry to have to bring this up, but the hospital needed to know what funeral arrangements we had in mind. They were very gracious about it, and one had strong feelings about which funeral home she wanted her mother’s services held at. I asked if they wanted a plot or a mausoleum and the same one said she did not want her mother buried in the ground. I did not have the courage to even ask if cremation was a consideration, because I felt it would be an offensive question to them. So it was decided which funeral home would be used, and the cemetery was not as specific, as long as they had a mausoleum. I asked if they wanted to be involved in making the arrangements, or if they wanted Andy and me to take care of all the details. They both said they wanted us to make the arrangements. I went over to the nurse to inform her of the decision and she said we needed to call the funeral home and set things up. Thankfully, someone knew what to do! I returned to the waiting area and briefed Andy and he said, “Whatever they want.”

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY. I appreciate all of your comments and wish all caregivers the strength they need to cope each day!

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It must have been another forty-five minutes before a team of three doctors, including the surgeon emerged to tell us that Clara was dead. The girls seemed shocked by the news, and I was bewildered at their reaction. One of them flipped a chair and screamed towards me and my family, “I bet you are all happy now, you got your wish.” With that she stormed out of the waiting room screaming her husband’s name, with the other one following. Incredibly, at that moment her husband appeared. He had arrived at the hospital, but due to the late hour, could only enter the hospital through the emergency room for security reasons. He was lost wandering the hallways looking for us, when he heard his wife’s voice. I’m sure quite a bit of the hospital heard her voice in her distress. The timing of his arrival was unbelievable, and since Andy had just run after his sisters again, I could point him in her direction. It was obvious he was just what she needed for comfort. I asked the doctors when we could see her and they said they would clean her up, remove the tubes, and then someone would be out to get us. I thanked them for their time and kindness. Then I sat there replaying the outburst towards me and my family. Then I thought, ‘I am happy, I did get my wish, but how could she know that?’ In my heart, I really do believe my wish that evening was all about Clara, not about me getting a break from caring for Clara. At this point Andy returned, somewhat shaken but in control. He worried for his sisters. I told our visitors that we really appreciated them coming, but we had a long night ahead of us and for them to go home. They all stayed put. Who knows what to do in these situations? In time, the girls and the one husband returned to the waiting room. A nurse appeared saying we could see Clara now. They were still waiting for the other husband to arrive and they seemed conflicted as to what to do. I said I would wait and keep an eye out for him and escort him back to the recovery area. Andy walked back with his sisters. It wasn’t long before the other husband arrived, with their teenaged daughter. As we walked back, I saw them all huddled around Clara. Andy’s sister grabbed onto her daughter as they grieved together. I went over to Andy to give him a hug and he grabbed onto me and started wailing. I told myself to be strong for him. I think it startled his sisters to hear him crying so loudly. I knew it was in part about seeing them so sad, in part about his mother’s passing, and in part because he never wanted to look at his mother dead. As I was walking him out of the recovery area, he said, “I never wanted to look at her dead.” Despite that, I knew he walked back there to support his sisters. I wondered if they would ever realize the sacrifice Andy made for them that day. As we returned to the waiting room, my family and our friends surrounded Andy with love and support. I went out into the hallway to call Mike to let him know. Mike is very strong emotionally like me, and the few times he has broken down and cried in the past felt like stabs to my heart. He broke down on the phone but immediately pulled himself together to ask how his Dad was. He was going to drive up. I told him that it was late, by now it was around 11:00 p.m., his Dad was going to want to go home and go to bed. If his Dad knew that he was making the two hour trip up after working a long day, it would just be an added worry on him. With the hospital waiting area being empty other than us, my voice apparently traveled and Andy overheard our conversation. He said, “Please tell Mike not to come tonight.” Mike agreed to come the next morning.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY. I appreciate all of your comments and wish all caregivers the strength they need to cope each day!

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As I sat there with many thoughts and unpleasant images running through my head, out of the corner of my eye I saw the surgeon re-emerge. He had the same grim look on his face he did when he came out after her surgery. Again, he came and sat down next to me. This time, Andy and the girls quickly gathered around. The doctor began that they were having a difficult time bringing Clara out of anesthesia. Her blood pressure and heart rate were very low. Each time medicine would be administered to bring her pressure and heart rate up she would respond temporarily. The medication only lasted about ten minutes then all of her vitals would drop again. He needed to know if we wanted her kept alive on a machine. I could not believe this news. The girls seemed to have a hard time digesting what was being said. I understood and felt relief for the first time since Clara broke her leg. I thought, what is wrong with you Michele? The girls became understandably hysterical, and Andy tried to comfort them the best he could. Now, I sat with the doctor with him asking me what should be done. I knew Clara had a durable health care document that stated that she did not want to be kept alive on machines if there was no hope of her making a recovery. I did not want the girls to know the doctor was asking me this life or death question about their mother. I also feared that in the emotion of the moment, if the girls had to make a decision like that concerning their own mother, they would say to keep her alive on machines only to later regret it. I told the doctor that Clara had a great love for life and I have seen her fight to stay alive. With that being said, I added that Clara had specifically written her wishes that if she was in a position where there was no hope, she did not want to be kept alive on machines. I asked the doctor if we were to the point that there was no hope and he shook his head yes. I told him her durable health care documents were in her files with her wishes if he needed to confirm what I related. I then asked him if he understood what needed to be done. He said yes. I knew that meant all of the machines were going to be turned off. So I asked if Clara’s daughters could come back to say goodbye, he said, “Not now, when it is over.” My insides were shaking. The doctor just sat quietly next to me for a minute as I was thinking of how just two days earlier Andy said he was going to step up to the plate as his mother’s appointed health care agent. Yet here I am, the only one left in this room to make this actual life or death decision. In my heart, I knew I really was not making any decision; Clara had made her own decision a few years before. I really was trying to take care of Clara, even in this way. Then it hit me, Clara was going to die peacefully in her sleep. She was put under anesthesia, and never woke up. It wasn’t exactly like I hoped would happen in her own bed, but the nightmare I imagined of her going to the nursing home was over. I was able to take care of her down to the end, although I hated the broken leg part and the miserable pain that followed, she still died peacefully. As I was deep in my own thoughts, I did not notice at first that the doctor was gone. As I looked up to see where he went, I saw Andy running after him down the hallway. He spoke with the doctor briefly, and then came over to me. He told me he wanted to be sure that the doctor knew what his mother’s wishes were. Of course, he had run after his sisters, so he did not know about the conversation I already had with the doctor. It made me feel better that in his mind, he did not want that to fall on me and he was trying to step up to his responsibilities. Now was the waiting for it all to be over. Even though Clara was not declared clinically dead, to me we already received the news that she was dead. It was a foregone conclusion. The girls started making calls explaining how things had taking a turn for the worse. I felt bad for my family and our friends to be with us during such a stressful time, but it was also strengthening having them with us.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY. I appreciate all of your comments and wish all caregivers the strength they need to cope each day!

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I now sat there overwhelmingly disappointed. Her surgery was just one hurdle to clear. We still did not know what else was wrong with Clara, why she was so weak, what this mass was in her lungs. I thought of how difficult it was for Clara to get up and down before she had this metal rod in her leg. I kept getting visual images of her laying in a bed in the nursing home, slowly withering away. I felt sick that she survived the surgery, but tried to sit there looking happy. How could I ever express such feelings without sounding like my true concern was about me? I remembered hearing before those residents of nursing homes that have regular visitors usually get far better treatment than those that do not. Since the staff does not know when someone will be checking in they keep the patient in good care constantly. I had already mentally planned on going to the nursing home each day. I wondered if the other ones would be good about stopping in. I thought of how when Clara would be admitted to the hospital in the past, her one daughter would always come after work and stay until visiting hours were over. That was a short termed stay, how would they do with long termed? I was thinking of things in the future and I still had to call my sons and give them an update. When I called Mike and told him all turned out well, he said, “So it looks like Grand mom will eventually come back home, huh?” I said, “Yeap.” By my tone he picked up right away I did not consider that good news. As he commented on it, I panicked thinking if he could pick up on it, what about anyone else in the waiting room with us? I quickly changed my tone of voice to an upbeat, positive one for the rest of our conversation. I sat there thinking I was going to vomit, I just felt sick. I knew Clara was in no condition to come home, she needed the rehabilitation at the nursing home, and I knew I was in no condition to care for Clara in this condition. Plus, we were still back to the original problem that led to the broken femur in the first place, that had not yet been diagnosed. What was that unknown mass in her left lung that was noticed when she was first brought to the emergency room? Was Clara slowly dying, and the process was interrupted with this broken leg? Would this just drag out her misery even more? My hope of Clara going to sleep peacefully one night and just never waking up, seemed all but impossible now. How could I take the news that surgery went very well, as devastating news?

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY. I appreciate all of your comments and wish all caregivers the strength they need to cope each day!

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Soon my brother Jim and Maria walked in. We could hardly believe it since they were leaving in the morning for a weekend trip. It broke up the boredom. Then my other brother and his wife, Tom and Barb came in. They were going away on the same trip with Jim and Maria, so we never expected them to show up at the hospital around 8:00 p.m.at night. Moments later, close friends of ours, Mike and Amber walked in. Andy’s sisters were familiar with all of our visitors, and they were included in our conversation. Before long, it seemed like we branched off into little groups to visit, and Andy’s two sisters ended up chatting between themselves.

As the doors opened, my head turned to see the surgeon walking out with an x-ray film in his hand and a very grim look on his face. My heart started racing and I thought for sure he was coming out to tell us Clara was dead. Of everyone sitting there in the waiting room, he came and sat down next to me and started talking. At first, I don’t think everyone noticed he was there and I asked him to wait a moment and called them all over. On one hand I felt good that I was the one he came to first, as if he recognized that I was the primary one that cared for Clara. Then on the other hand I wondered what the girls were thinking about that. As everyone quickly gathered around, there was no more time for my thinking, just time to listen. The surgeon said that the surgery went well, and to my surprise I felt a big relief. As much as I would complain at times that it seemed like I would be taking care of Clara for the rest of my life, I still felt relief at this news. The surgeon did tell us that when the anesthesiologist put the breathing tube down her throat that some fluid squirted out. In my mind I was thinking it was good that some of that fluid came out, no matter how it happened. He showed us the x-ray and the reality of this metal rod attached to her bone with screws hit me. I asked if we could see her and he said not just yet, her blood pressure was a bit low, so they were slowly bringing her out of anesthesia. There was a lot of joy on the waiting room, the girls starting calling their husbands and some of Clara’s grandchildren to give them the good news.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY. I appreciate all of your comments and wish all caregivers the strength they need to cope each day!